Corey’s day was a little better. She was still very tired but she wasn’t as agitated as she was yesterday. Our nurse reported that she did not want to participate in speech therapy today. Corey has been complaining about mouth pain. We think it is ‘Burning Mouth Syndrome’. It feels as if your mouth, gums and tongue have a scalding sensation. It can result from a traumatic injury where the pain center of the brain has been affected. It can also be ignited from thrush (which was recently diagnosed for Corey). This Burning Mouth syndrome could also be why Corey has been refusing to swallow, speak, brush her teeth or use the ‘magic mouthwash’ that was prescribed to help with the symptoms.
Diane, our speech therapist, doesn’t consider Corey’s refusal to speak to be a sign of regression primarily because she sees progress in the formation of the words Corey is silently mouthing. Diane assured us that the breath and voice will come. It’s more important to see the continued development of the manipulation of the tongue to form what will be the sounds and words.
When I returned home Corey’s teacher was working with her on the Ipad. They have created a daily calendar as well as key phrases in a program that will “talk” for Corey. Some of the phrases are; I’m in pain, I can do more, I want to stop, I need some space, I want to cook, I’m tired, I want to lay down, I want to get up or I want to go outside. The program can add phrases as Corey wants to say more. As Corey taps her selection, a computerized voice recites the request. It will enable her to express herself until she can verbalize these requests on her own.
The afternoon rounded out with PT and OT. OT reported another first! Alice was holding Corey’s left hand in a handshake position. Alice turned Corey’s hand palm side up. She then asked Corey to rotate her left hand to a vertical position as if they were shaking hands. When Corey completed the motion, Alice literally squealed out loud, “Corey, you did it”! Tonight as Corey and I were sitting together I held her hand so she could look at it. I asked her to watch her hand. Then I asked her to open her fingers (releasing the clenched fist). Corey’s thumb started to twitch and each finger in order began to twitch. Ever so slightly, the thumb and pointer finger moved. Corey was smiling as she watched her left hand try to open. She got so excited; she started to kick her left leg!
We closed the night with reading the carepage and playing on facebook. Tonight Corey wanted to write her friends; Danielle, Claire, Leah, Courtney, Tyler, Elaine, Selina and Lexi. She didn’t write much, just a simple “Hi” and “miss you” but it truthfully was a sign of progression. For the first time she asked for her friends by name.
Corey as the day progressed so did you! It’s amazing to watch each smile, each new word and each new movement. Little by little you’re breaking through. It was especially exciting to watch you reconnect with your friends. There was a historical line you may know; ‘the shot that was heard around the world’…well I’m sure your “status” and “posts” to your friends have already gone viral across the internet! It was a fun night honey. Happy dreams xoxo